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You can’t survive or thrive on this caregiving journey without them.

I agree with Elissia Lewin of Nancy’s House, isolation and exhaustion are head on, the two biggest issues for caregivers. If not addressed, disease and depression are often the result. I can’t help you with exhaustion, but I can tell you that one antidote to isolation is a caregiver support network. Without it, your physical and mental well-being suffers.

I am very blessed, and I know it. I have friends from childhood through adulthood that are part of my caregiver support network. I call them my caregiver “peeps”. Family is included in this friends category. Even if we weren’t related, I would choose to have them in my life.

I’m fortunate because my support network has a rich history with my parents and me. They know us, love us, and our shared history allows us to be honest with one another. Don’t get me wrong, it takes work to maintain these relationships. The times when I’m overwhelmed or exhausted and don’t want to reach out, are the times when I need support the most.
 
There are times when I feel like all I do is complain to my peeps. Maybe I am, and that’s OK. For a little while. But no one, including me, wants to hear about the same problem over and over. I’ve come to realize the third time I hear MYSELF talking (let’s be honest, whining) about the same problem, it’s time to say: “Enough, do something about this, change the way you deal with it, or your attitude, and stop complaining about it.”

Then there are times when there are just no good solutions, I’m just stuck in the mud. As Denise Brown of Caregiving.com says: “Sometimes you just need a friend to sit in the mud with you, not try to solve it for you. Sometimes just sitting in the mud and hearing someone (like a caregiver support peep) say, ‘this is awful’ is validating and healing.”

The reality is that too many caregivers don’t have a support network to call on. Don’t give up, there is amazing online support available to you.

  • Look on Facebook for closed groups. Search by on things like #caregiving #caregivers, or by a disease state like #FTD.
  • Check out sites like Caregiving.com, Seniorcare.com, TheCaregiverSpace.org, DailyCaring.com
  • Check out online disease communities like SmartPatients.com or Inspire.com. Look at websites like the Mayo clinic or the Alzheimer’s foundation.
  • Talk to your doctor about local support groups.
  • If your life seems hopeless, seek professional support. You need to be able to unload, get a second opinion, need to be heard and validated.

Note: Medicare will now pay for counseling with a social worker. It is possible to do the work by phone. Ask your physician for details.

Caregiving is hard. If you’re not careful, it can destroy the relationship you have with your caree and other family members. Support from your peeps (live or online) can help you get beyond the overwhelming tasks, the business of caregiving and back to who you are as friend, child, spouse.

My caregiving support peeps give me respite. When we are together, laughing, catching up on one another’s lives, I am Deb again not mom’s caregiver. And that is a gift.
 
 
Disclaimer: The material in this blog is for educational purposes only. It is not intended to replace, nor does it replace, consulting with a physician, lawyer, accountant, financial planner or other qualified professional.

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It happens and I have to own it.

Typically, I’m a glass-half full person, able to let many things roll off my back. Until I can’t. Then I get cranky. By the way, being cranky isn’t a bad thing, we all have those moments (or days). But my attitude affects mom’s attitude, and it can turn into a downward spiral quickly if we’re not careful.

I’ve given a lot of thought to this topic, trying to identify the whens and whys and what I can do about these moments. Here is what I’ve realized.

I’m an extravert until I’m an introvert. When I have a busy week networking for work, guests at my house for a couple of days, or just a weekend like this last one with no down time, I need space and quiet time. When a mom weekend comes at the tail end of insanity, it makes it hard because I AM her social interaction. What I must do is tell her what I need, up front that first night. “Mom I’m wiped out. Can we just be together tonight, and deal with the list of things for me to do tomorrow?” Having this conversation instead of giving her monosyllabic answers goes a long way to keeping our relationship on an even keel.

I’ve come to realize that I have certain hot buttons. It’s on me to tell mom about them up front so she doesn’t mistakenly push them. For example, finding out something has been a problem for a while (her chair in the kitchen), but she didn’t want to bother me with it. Suddenly it became a crisis that we had to deal with immediately. Her bottom line is not wanting to be a burden, so she may wait to tell about a problem. But dealing with something before it’s a crisis goes a long way with me. Now mom makes a list, we talk about it, prioritize together, and work on things based on criteria, safety being number one.

I have the right to set boundaries and stick by them. Sometimes I don’t even know it is a boundary issue until I can feel the hair on the back of my neck go up. Or I let it happen and then get angry about it. This one is hard because my reflex is to snap a quick, heated reply that makes mom feel like I’m snapping her head off. I’m learning to take a breath and not answer right away. I strive for an internal dialogue before answering. “Is this a safety issue? If not, can it wait?”

Sometimes I’m just in a bad mood. There I said it. Other times I get frustrated with mom and that puts me in a bad mood. Either way, I feel guilty because it results in her feeling badly and we don’t enjoy our time together. But getting frustrated and angry with mom is nothing new. It happened all the time growing up. What is new, is that I am her caregiver. And that adds a different layer to our relationship. The bottom line is it is on me to own when I’m being cranky, tell mom what is going on, take space if I need it and apologize if I’m taking my bad mood out on her.

Oh, and by the way, I ask the same of her.

Disclaimer: The material in this blog is for educational purposes only. It is not intended to replace, nor does it replace, consulting with a physician, lawyer, accountant, financial planner or other qualified professional.

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Managing finances is an important piece of your care plan.

Keeping Mom in her home for as long as possible is the foundation of her care plan. You see, the good news is mom is in relatively good health for 86, the flip side? She will most likely outlive her money.

Figuring out finances meant looking for ways to ensure enough monthly income to pay for upkeep on a 60-year-old home, taxes, homeowners insurance, living expenses AND caregiving. Two additional income streams: VA Aid and Attendant Benefits and a reverse mortgage are the ones we decided to pursue. (Jump to Lessons Learned)

Even with additional VA money, we would not have enough monthly income to ensure mom could stay at home with a caregiver. We considered taking out a line of credit or buying the home outright. But mom was unlikely to quality for a line of credit due to income considerations. If she did qualify, repayment would begin immediately, eating into money we would need in the long run. We discussed buying the home from mom, but I was in jeopardy of losing my job and could not take on additional financial debt. Which left me exploring reverse mortgages.

When the HUD/FHA Home Equity Conversion Mortgage (HECM) or “reverse mortgage” federal program came into being in the 1980’s, there was considerable regulation, but there were both private reverse mortgages from insurance companies that were predatory and there were some bad actors within the HECM business. When the economy changed in the early 2000’s, the reputation of these tools was tarnished. Overseen by HUD/FHA, there are now tight rules, regulations and many consumer safe guards are in place. All of which made a reverse mortgage the best financial tool for us.

To qualify for a reverse mortgage:

  • You must be 62 or older, you may have a younger spouse/partner.
  • The mortgage is only available on your primary residence.
  • You will be required to first pay off any liens on the property. You can use the initial proceeds of the reverse mortgage to pay off these liens.
  • You are required to go through a financial assessment that proves you have sufficient income, assets or proceeds from the reverse mortgage to cover expenses. In addition, you record of on-time payments of property taxes, mortgages, etc. will be reviewed.
  • If your income is not sufficient, some or all the reverse mortgage money proceeds will be “set aside” in escrow to pay for future taxes.

Strengths of Reverse Mortgages:

  • You continue to own the home.
  • If you use up all the money in the reverse mortgage loan you are not forced to sell your home.
  • You will never owe more on the loan than the fair market value of the home. FHA imposes a mandatory mortgage insurance that will cover the difference if more is owed than the market value.
  • Borrowers aren’t personally responsible for the loan. The liability rests on the property. These are “non-recourse” loans. As such, the mortgage can be under water and even if the borrower has funds, the lender has no recourse against the borrower.
  • Heirs are not responsible for their parent’s loan. Heirs can purchase the family home outright or use a normal mortgage. If children don’t want to purchase the home, the equity will go to the estate.
  • Reverse mortgage proceeds are not considered income, so it does not interfere with Social Security or most other means tested benefits.
  • If you are on disability or Medicaid you can still have a reverse mortgage. You need to ensure that any moneys taken out within a month is spent down to the federal required limits.
    This financial tool is not meant to be a “loan of last resort”. People that run up huge credit card bills may find it more difficult to get a reverse mortgage.

Additional qualifications:

  • A full property appraisal is required. If deficiencies/repairs are identified during the appraisal, they will have to be corrected within six months of closing.
  • The borrower must have a counseling session with a HUD/FHA counselor. It is to ensure the borrower(s) understand loan requirements, options for receiving the money and has all questions answered prior to the lender being able to write the loan.
  • The loan will come due if you are not living there for 12 consecutive months. However, if you wind up in rehab for a time, that does not call the loan. If you go from rehab to assisted living or a skilled nursing facility permanently, the loan will come due.
  • Who writes reverse mortgages?
    Banks, mortgage companies and reverse mortgage specialists can write a reverse mortgage. There can be benefits to shopping around for the best lender to use. You may find better rates, service and flexibility after doing some research.

    If it sounds like a reverse mortgage is a financial tool that can help, then find a lender to get into the nitty gritty details with you. This includes:

    • Deciding on how to receive the money: monthly payment, lump sum upfront, line of credit, or a combination.
    • There may be “set asides” of things like property taxes attached to the loan.
    • What are charges for the loan? The Mortgage Insurance Premium (MIP) is charged by all lenders. It protects the lender from loss and protects the borrower from owing more than the fair market value for the home.

    Lessons Learned:

    • Since you continue to own the home, you must maintain it and pay taxes on it.
    • To get a reverse mortgage on a condominium, the development must be HUD approved.
    • There is a non-refundable fee for the HUD/FHA counseling session. You can do it over the phone. But I would schedule it for when someone else is there. In our case, Mom could not hear some of the questions. I would take the phone, repeat the question and hand the phone back to her.
    • People don’t lose their home because of the reverse mortgage. People lose their homes because they fail to pay property taxes, HOA fees, home owner’s insurance or they fail to maintain the residence.
    • Find someone you trust, even though safe guards that have been put in place are followed by everyone, flexibility for your situation may be needed.
    • Keep in mind that staying in the home may cut off the option of 2 years private pay many Assisted Living facilities require. Without the money for private pay, you can expect to go directly to a Medicaid bed.
    • Look for an institution that takes a financial planner approach, that can advise you how to maintain living in your home by making the money last. The bank or lender should subscribe to and adhere to the National Reverse Mortgage Lenders Association Code of Ethics.
    • /ul>

    Note: VA Aid and Attendant Benefits is a pension benefit open to veterans or their surviving spouses. It is used to help pay for care in the home, nursing home or assisted living facility. For more information and help on how to apply, you can contact an elder law attorney or use the organization we did: Patriot Angels.

    With thanks to my collaboration partners.

    Disclaimer: The material in this blog is for educational purposes only. It is not intended to replace, nor does it replace, consulting with a physician, lawyer, accountant, financial planner or other qualified professional.

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    What challenges might you enounter, given HIPAA regulations?

    [Part 2 of 2]

    Part 1 of this blog described when you might want to get copies of your, or your parent’s, health records. It also discussed the critical federal law, HIPAA, and how the resulting privacy rule assures that patients have appropriate access. Part 2 gives you the practical details about getting access, including some options to consider, along with challenges you might encounter.

    Getting access to records and making choices:
    To take advantage of this right, you will be required to complete a form describing what information you wish to view or have copied or transmitted, and providing other details. Unfortunately, there is no standard form or process, and each healthcare organization across the country handles this differently. In all cases, the form should include options describing what information that organization has about the patient (their Designated Record Set) so that the patient, or representative, can know what is possible to request. Note that this may include information in different forms such as some electronic data in addition to some paper information.

    Organizations are not required to provide access or copies on the spot, although they may. They generally have 30 days to get back to you to set a date for you to view the information, to send a copy of the information, or, in limited situations, to let you know they need another 30 days to access offsite information or to inform you that your request is denied for one of the limited exceptions. (The regulations include details about how exceptions are handled and patients’ right to dispute decisions.)

    Healthcare consumers have a few decisions related to this access right. You need to decide what information you want, and then decide whether you just want to view it or obtain a copy of it or have a copy sent to someone else. If you want a copy, you need to decide on the form and format of the copy.

    Patients typically choose either paper photocopies or electronic copies, with electronic copies becoming today’s norm. Patients, or their adult children, can compile this information from different sources in an electronic file or folder. Some people use commercial products on their devices or in the cloud, while others save the information on their own devices and storage media such as an encrypted USB drive.

    If you decide to receive the information in electronic form, the organization should give you options such as sending it to you via email or putting it on a CD or USB drive that is mailed to you or that you can pick up. The organization also should tell you what format(s) will be used, and they must be common formats such as Word documents or PDFs that do not require you to buy special software to read the document or file.

    Also, the organization should inform you about how the information will be secured. It will likely be encrypted so that no one outside the organization except you, the recipient, will be able to decrypt and read it. The organization will give you a code, the “key” you will use to decrypt the information. Note that once you receive the information, it is your responsibility, not the healthcare organization’s, to keep it secure and private according to the patient’s wishes.

    Finally, there is the matter of cost. The government and some parts of the healthcare industry are at odds over charging fees for patients to obtain copies of their own information. The privacy rule does permit organizations to charge limited fees, as discussed below. However, HHS has stated their preference that patients should not have to pay, and some providers agree and do not charge patients for copies. Regardless, a patient’s financial limitations should never be a barrier to obtaining a copy of his or her own health information.

    Healthcare organizations (or sometimes another business holding records for that hospital or other provider organization) must have a procedure for patients to view their information, paper or electronic, at no charge. Patients typically come to the facility where they are permitted to view their information. Note that patients are permitted to take photos of their paper records or computer screens showing their electronic information. This can be a workaround if an organization imposes unreasonable fees for copies.

    The regulations for charging copy fees are somewhat complicated. Essentially, organizations may opt for a low flat fee of $6.50, or may calculate a reasonable fee for photocopying that is no more than actual cost as defined in the regulations and subsequent guidance from HHS. Organizations using electronic records must be able to provide electronic copies. Further, they may not charge a “per page” copying fee from electronic records.

    Stumbling blocks you might encounter:
    Patients and their representatives may face difficulties in exercising this important HIPAA privacy right of access. Sometimes the organization you are dealing with may not fully understand the regulations – this is especially true in small organizations. Sometimes staff lack formal procedures to follow and may be unable to answer your questions. Organizations may not understand their obligation to provide access to more than the medical record. They may not know that patients have the right to view information for free, or that viewing and copies must be provided within 30 days. Unfortunately, it is not uncommon for patients to be overcharged for copies in violation of HIPAA. (Note that HIPAA takes precedence over state laws that give permission to charge more for copies.) And finally, in hospitals and medical centers, there is rarely a centralized process for obtaining copies of patient data. That puts an unnecessary burden on patients and families, and it is contrary to the spirit of the HIPAA privacy rule.

    If you encounter such stumbling blocks, you can reach out to the provider’s privacy officer who handles concerns about compliance with the HIPAA privacy rule. In situations that can’t be satisfactorily resolved, HIPAA gives patients the right to file a complaint with HHS. HHS’s Office for Civil Rights (OCR) handles complaints and investigations, and they are sensitive to cases in which patients are thwarted from exercising their privacy rights. (See HHS Regional Offices to file a complaint.)

    More reasons to view or get a copy of health records:
    The HIPAA access right is powerful and healthcare consumers should take advantage of it. Not only should we be well informed when we are responsible for others, such as a parent, but also we should review what organizations have on file to identify and correct omissions and even errors.

    Health records may become corrupted accidently with another patient’s information, especially when patient names are similar or the same. This can happen with both paper and electronic records.

    A major problem in healthcare is medical fraud, such as when a provider submits claims to be paid for services that were never provided. If that information is used by another provider to treat the patient, it could lead to excessive testing or procedures and even harm to the patient.

    Although these situations are not common, they do occur and can lead to misdiagnosis and inappropriate patient care. Thus it is very important to identify the problem and have the information corrected. The privacy rule also requires organizations to have a record correction (“amendment”) process.

    Best practice: get copies and review them:
    Even if there is no particular reason to get a copy of your, or your parent’s, health records, it is a good practice to do so occasionally.

    We usually assume we know what’s in our health record. But when we read through it, we may be surprised to find misleading statements. For example, when asked if you drink, you might have answered “occasionally,” but this information may have been recorded as “patient drinks,” implying a possible alcohol abuse problem to another professional reading the record. Or you may find omissions. For example, you had a flu shot or a pneumonia vaccination or a tetanus booster this year, but not through this provider. Ideally for comprehensive care, all our health information should be consolidated in a single system or a linked set of records so that our providers have all the information needed to keep us healthy.

    Note: that HHS provides an explanation of the right to access and guidance regarding charging fees for copies (scroll down on the page) at: Health Information Privacy
     
    With thanks to contributor, Kate Borten, CISSP, CISM, HCISPP, President, the Marblehead Group.

    Kate is passionate about teaching people what constitute good security and privacy practices and why they’re relevant and valuable.

    Kate worked in healthcare IT for many years before she was tapped to lead Massachusetts General Hospital’s first information security program. Then along came HIPAA, shining a light on security and privacy issues and solutions in the industry. In 1999 Kate formed The Marblehead Group, a security and privacy consultancy focused mainly on helping organizations protect patient information.
    Disclaimer: The material in this blog is for educational purposes only. It is not intended to replace, nor does it replace, consulting with a physician, lawyer, accountant, financial planner or other qualified professional.

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    As your parent’s advocate, with HIPAA you have the right to obtain records.

    [Part 1 of 2]

    Managing your own health care, much less a parent’s care, can quickly become complicated as health problems arise. When we’re young and healthy, an annual physical checkup, a few screening tests, a dental cleaning, and an eye exam are easy to manage over a year. But as I recently experienced, a simple dental problem mushroomed into multiple procedures by specialists in different practices, various prescriptions, and side effects that also had to be addressed. Unexpectedly, my paper file of appointments, prescriptions, symptoms and side effects, instructions, and payments became a fat folder.

    And what happens when life gets more demanding and an elderly parent develops numerous health problems and sees many different care providers? How do we keep up with all the details? How do we ensure that anyone caring for that parent knows the bigger picture and has all the necessary information on the patient’s condition, treatment, and medications?

    In the past a distressing number of patient deaths were attributed to incomplete or incorrect information about the patient. The industry does a better job avoiding mistakes nowadays, thanks in part to electronic health records that, for example, can check for drug interactions and alert doctors, nurses, and pharmacists to contraindications. But one provider’s information may not always travel with the patient to another healthcare provider. And the patient’s family may not have complete information either. Although healthcare providers are the professionals directly responsible for patient care, we know that the best outcomes are where family is involved and informed. When patients cannot advocate for themselves, a family member is irreplaceable.

    In addition to knowing everything you can about your parent’s health to be supportive and to ensure the best care, sometimes your knowledge of the details can be critical to your parent’s treatment and outcome. For example, your parent may forget to tell a healthcare provider every supplement he or she is taking, and one supplement may interact with a prescription to weaken or change the drug’s effect on your parent. It is important that that supplement be documented in the patient’s record for anyone involved in the patient’s care.

    The Health Insurance Portability and Accountability Act (HIPAA)
    Congress passed this sweeping law in 1996. One goal was to push the healthcare industry to modernize and save money by moving away from paper records and to electronic systems. Further, those electronic systems should be able to easily communicate by using standardized transactions such as claims sent by providers to health insurers for payment.

    Wisely, Congress recognized that shifting to electronic systems increases the security and privacy risks to patient data in electronic form. Now, instead of a single, physical paper record in a doctor’s office, electronic records can be simultaneously accessed through computers from anywhere in the world. This has clear advantages for patient care, but the industry must take strong measures to protect electronic systems in ways never imagined in the days of paper records. Hence, Congress directed the US Department of Health and Human Services (HHS) to write and enforce security and privacy regulations demanded by HIPAA.

    In 2001 HHS published the HIPAA privacy rule. The people who wrote this set of regulations or requirements for the healthcare industry expected that healthcare providers – including not only hospitals, but also nursing facilities, out-patient offices (such as medical, surgical, dental, mental health, and physical therapy), and pharmacies – will keep accurate and complete records of patient care. Providers are required to have formal record-keeping procedures in order to be credentialed and to receive payment for services and products.

    The HIPAA privacy rule tells healthcare providers and health insurers how they must protect patient information (called Protected Health Information or PHI) from misuse. And the rule tells them – and us, the healthcare consumers – what rights we have regarding the privacy of that information. These rights reflect commonly accepted privacy rights in the Western world today. They are summarized in the HIPAA privacy notice you receive when to go to a new provider and can read on every healthcare provider and payer’s website.

    Among the HIPAA privacy rights is the right to access information about ourselves, or those we represent, such as a parent. To be the best advocates for ourselves, our parents, and our children, it is valuable to understand the details contained in this right.

    The HIPAA privacy rule and the right of access includes the following:

  • Patients, and their representatives, have the right to view their information, get copies of the information, and have copies sent to a third party, such as another healthcare provider. (There are a few, limited exceptions such as certain mental health notes, information involved in a legal case, information used for professional “peer” reviews, and research studies.)
  • This applies to patient information in any form including paper, electronic, films, and even voice recordings.
  • This applies not only to information contained in the traditional legal medical record, but to all patient-identified information that the organization uses to make decisions about the patient. That can include, for example, images (such as films and digital x-rays) and billing records. (This is called the organization’s Designated Record Set.)
    • Note that hospitals and medical centers typically have “portals” or websites where patients can log on and access information such as their appointments and lab test results. While patients may find this the most relevant information, be aware that portals do not include all the information patients are entitled to view and have copied.

    In Part 2, You will learn how to take advantage of this right, as well as some choices and challenges you may face.

    Note: HHS provides an explanation of the right to access and guidance regarding charging fees for copies (scroll down on the page) at: Health Information Privacy

     
    With thanks to contributor, Kate Borten, CISSP, CISM, HCISPP, President, the Marblehead Group.

    Kate is passionate about teaching people what constitute good security and privacy practices and why they’re relevant and valuable.

    Kate worked in healthcare IT for many years before she was tapped to lead Massachusetts General Hospital’s first information security program. Then along came HIPAA, shining a light on security and privacy issues and solutions in the industry. In 1999 Kate formed The Marblehead Group, a security and privacy consultancy focused mainly on helping organizations protect patient information.

    Disclaimer: The material in this blog is for educational purposes only. It is not intended to replace, nor does it replace, consulting with a physician, lawyer, accountant, financial planner or other qualified professional.

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    If you are on oxygen therapy, have you notified your power company?

    Often when the power goes out due to a storm it’s a minor inconvenience. For most of us, all we need is a few candles to see and board game or a book to pass the time. But when you’re caring for aging parents, a power outage can have serious consequences, especially if the situation escalates past a few hours. Preparing today can help keep you and your parents safe.

    Basic Emergency Preparedness:

    • Find out what type of emergencies or disasters are likely to occur in your area and how you will be warned. Register, if possible, for emergency assistance programs, like Nixle. Sign up for Nixle where your parents live. It will keep you up-to-date on relevant information from the local public safety departments.
    • Pack extra food for you and household members. Including the 4 legged variety.
    • Pack extra medication and rotate it so it does not expire.
    • Get a battery-powered or hand crank radio.
    • Understand the emergency plans of local organizations you are associated with such as schools, churches, jobs, grocery stores, and civic organizations.
    • Discuss the plan with family and any caregivers.
    • Designate safe zones or shelters and how to get to them. Routes should be visibly posted near a list of emergency contact numbers.

    Equipment Emergency Preparedness for Caregivers:

    • You will need a record of equipment and the serial and model numbers.
    • Pack additional medicine, oxygen, and catheters.
    • Build an extra supply of medicine. Most prescriptions allow for refills at 25 days so you don’t have to wait until the end of the month when you are empty.
    • Make copies of prescriptions and insurance plans so you can replace equipment, medication, or supplies.
    • Bring a list with the doctors’ names along with a change of clothes and shoes.
    • Plan for people (family, neighbors, caregivers, organizations) to check in on you in the event of an emergency.
    • Be certain additional people understand how to operate equipment necessary for a successful evacuation. This includes understanding how to turn off things such as gas, water, power, etc.

    When your caree requires special equipment, there are additional considerations like battery power. Most of the power driven medical equipment we provide at Aeroflow Healthcare has a battery pack option. For example, the Trilogy Ventilator comes with a detachable and internal battery power. Both are rated for 3 to 4 hours. You can buy batteries for CPAP machines, most last 8 hours.

    People who need wheelchairs (manual or powered) need to consider carefully how to plan for emergencies that require building evacuations (like fires).

    • Consider purchasing a manual wheelchair just in case you are unable to charge your powered wheelchair.
    • Consider living on the ground floor, elevators might not work during emergencies.
    • Consider installing accessibility features like ramps, essential during emergencies.

    If you rely on oxygen therapy, there are two major steps you need to take to be prepared for a power outage.

    • Call you power company and register with them as someone who requires constant electricity to keep you oxygen concentrator running. Ask them how much of a priority oxygen dependent patients are in a power outage. Ask if they will provide a generator if the outage is over a certain number of hours.
    • Contact your DME supplier. They are required to supply your oxygen even in a weather emergency. Ask them how much oxygen (in tank form) they think you will need in an outage until they can get you more, then order the extra tanks for emergency usage.

    With thanks to this sponsored blog contributor Aeroflow Healthcare

    Alex is the Senior SEO Strategist at Aeroflow Healthcare and loves helping people find affordable medical equipment so they can live safely and independently at home. Navigating insurance, finding quality equipment, and talking to people that care is difficult. Aeroflow Healthcare can help with all three of those options, and Alex tries to tell as many people as he can that we can help.
     
     
     
    Disclaimer: The material in this blog is for educational purposes only. It is not intended to replace, nor does it replace, consulting with a physician, lawyer, accountant, financial planner or other qualified professional.

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    And I don’t mean the contract you sign with an agency.

    I believe that each relationship is built on a contract: Spouses, Significant Others, Parent/Child, even Friends. Informal and often unspoken, each contract defines interactions and expectations for the relationship. At the most basic level it defines what you are willing or not willing to do for one another.

    Imagine being married for 61 years and your spouse dies. That contract, that way of living and being in the world dies as well. Then your child becomes your caregiver. Not only the marriage contract is blown out of the water, but the parent/child contract changes as well. Suddenly expectations are different, and without recognizing and talking about these changes, it can harm the relationship.

    I got a taste for what was to come as a caregiver when dad was in the hospital and I was still working. Suddenly I became responsible for mom, the house, two dogs, and dad. I quickly realized I could not continue some of the rituals, some of the ways dad cared for mom and keep my sanity and my health.

    Early on as mom’s caregiver, I realized that she had certain expectations about things continuing to work as it had between her and dad. This is an unrealistic expectation on so many levels. Especially if the caregiver is working, has spouse/children, or lives far away. Your competing expectations require that you talk about them and renegotiate the contract. And that is OK. In fact, it’s more than OK, it’s healthy.

    Sometimes it’s the little things you change in a contract that makes you feel heard and validated. One of the first changes I asked mom to make was around the bedtime ritual. Dad brought her a glass of water, turned on the light, made sure the curtains were closed, turned down the bed and made sure mom had clothes to dress in the morning. Oh, and every night he brought toothbrush and toothpaste to her. Mom brushes her teeth in a different room, so she doesn’t have to stand while doing it. That one task made my head explode. I asked mom what we could change in her bedtime ritual since I found it overwhelming. Now everything she needs to brush her teeth are in the room where she performs that task. Taking that one little thing off my plate was such a relief. But still it was a letting go of her contract with dad and I appreciate it.

    Sometimes it’s bigger things you change in a contract that makes you feel heard and validated. In our family; my parents’ marriage contract was based on traditional roles. My parents made many decisions mutually, but mom is a worrier, so dad shielded her from many things, like what it took to maintain the house. This carried over into dad’s role as mom’s caregiver. He never really told her how sick he was, continuing to go food shopping, run errands, and maintain the house long after he should have asked for help.

    When he died, we had a hard conversation about secrets. I was not going to shield her from the reality of what it takes to keep a 60-year-old home in good repair. I was going to ask her to make phone calls that dad would have taken care of for them. Basically, I was not going to be responsible for making all the decisions. We would make them together as a team.

    This has been hard for mom. We have a completely different contract than the one she had with dad. It’s hard to let go of old roles, to pick up new ones, and especially come to terms with feelings of “this is not how it was supposed to be, this is not what I signed up for.” I often tell her how proud I am of her, how I know this is just one more thing in her life that has changed, and I realize how difficult this is for her.

    So, what is your caregiver contract? What are the unspoken expectations? What difficult conversation do you need to work out for a new, realistic and manageable contract?

    Some questions to ask yourself and your care-receiver:

    • What help can we ask for, or say yes to, that will make our contract more manageable? Maybe it’s time to hire someone to cut the lawn.
    • What rituals throughout the day can you change, modify or do away with today? Maybe mom can’t put away the clothes, but she can fold them while sitting.
    • What boundaries do you have to set? Maybe there is only one trip to the grocery store in a weekend.

    And be prepared to revisit this contract. Things change.

    Disclaimer: The material in this blog is for educational purposes only. It is not intended to replace, nor does it replace, consulting with a physician, lawyer, accountant, financial planner or other qualified professional.

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    Every Statement Is Not A Bill.

    Imagine getting this advice from an Elder Law Attorney. And yet, that is exactly what Cathy Sikorski, Esq. colleague and friend told me in a recent conversation.

    “Excuse me, did I hear you correctly? Don’t immediately pay a hospital, doctor, physical therapist or any other medical provider bill?”

    Yes, yes you did. You need to do some checking before paying. In her article “Don’t pay those medical bills” Cathy explains why you should not immediately pay the bill, and offers practical advice on medical billing and dealing with insurance.

    In addition, Cathy has written a terrific book “Who Moved My Teeth” where she gets into even more details on this topic and many others including: Powers of Attorney, Medicare, Medicaid and Medigap, and how to get insurance companies, social security, the VA and doctors to talk to you, the caregiver. “Who Moved My Teeth” is full of practical tips, links to resources and is an entertaining read.

    Cathy Sikorski is a practicing attorney in dealing in Elder Law, and has been a significant caregiver for the past 25 years. She has engaged in many speaking engagements, radio programs, and podcasts to promote preparation and humor in aging, healthcare and caregiving.
     
     
     
     
     
    Disclaimer: The material in this blog is for educational purposes only. It is not intended to replace, nor does it replace, consulting with a physician, lawyer, accountant, financial planner or other qualified professional.

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    Wait, What? Why?

    Parents and sexuality. Here are two words that adult children don’t want to put together or acknowledge. Add to that the word dementia and you go from TMI to complete disbelief and feelings that are incredibly difficult to process.

    I had the good fortune to hear Rebekah Wilson of Aging Care Coach, LLC present on just this topic: Sexuality in Dementia. Rebekah does an amazing job of taking this difficult subject and making it OK. Her insight into how dementia works, along with her research into intimacy, helped me to understand and normalize the idea of sexuality and dementia.

    It is important to understand that adults with dementia have intimacy needs like any other senior. It doesn’t matter if the person with dementia is living at home or in a memory care facility. Chances are good the topic will come up and you should be prepared.

    Here are some of the insights Rebekah shared, and why we talked about her writing this article.

    • If the caregiver at home is the opposite sex of the person with dementia and they look like the spouse, the person with dementia may think the child IS the spouse. And this can lead to inappropriate sexual behavior.
    • If a person with dementia is living in a memory care unit and they form a loving bond with another person in the facility, recognize that they don’t know that they are still married. What they know, is they are sharing meals and living space with someone that they like, just as they did with their spouse.

    These are just a few of the AHA moments I came away with after Rebekah’s presentation. I can’t speak to the emotions children of people with dementia feel when these situations arise, because this is not our story. But I do think it is critically important to address sexuality in dementia head on. And to help family members understand what may happen and why.

    Click here to read Rebekah’s full article: Sexuality in Dementia

    With thanks to Rebekah Wilson:
    Rebekah Wilson, MSW, is a dementia care specialist, trainer and the owner of Aging Care Coach, LLC with fourteen years of experience in elder care services including hospice, home health care, assisted living, and care management. In these arenas, she has used her specialties in teaching, community outreach, marketing, and developing innovative strategies for providing comfort care for seniors and their care partners. She has presented at local, state, and national conferences as a trainer on Alzheimer’s disease, Frontotemporal Dementia, Behavior Management, Navigating Transitions and other caregiving topics. As a Care Coach/Care Manager, she serves as a dementia care consultant mentoring care partners in developing individualized non-pharmacological interventions and innovative care solutions. Rebekah has devoted her career to improving quality of life for seniors and supporting those involved in their care. She considers it an honor to help those navigating the aging process. It would be an honor to help you and your loved ones navigate and THRIVE – not just survive – the aging process.

    Disclaimer: The material in this blog is for educational purposes only. It is not intended to replace, nor does it replace, consulting with a physician, lawyer, accountant, financial planner or other qualified professional.

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    This is Murphy, a therapy dog, and Anne, a person living with dementia.*

    As soon as Murphy was carefully positioned in her lap, Anne began gently petting her. Then she began to sing and rock her. Tears welled up in the eyes of Anne’s caregiver and mine.

    I had the privilege of participating in a Pet Therapy Community Class at The Alzheimer’s Foundation of America (AFA). This is where I met therapy dogs, Murphy and April, their owner/handlers’, individuals living with dementia, and their families and caregivers. Attendees crossed cultures, included men and women, and the response was universal. As Murphy and April visited with each person, they completely focused on the animal. You could see them relax and their breath slow down. And the smiles, oh the smiles. I wish you had been there.

    The term “pet therapy” is a common one, but as Nancy George-Michalson (Founder and Executive Director of New York Therapy Animals, Inc.) explained, the more accurate term is “Animal-Assisted Interactions” (AAI). AAI covers the two sides of this work, animals volunteering in an activity such as the community class I attended, and animals volunteering in therapy.

    Activities like the Alzheimer’s Foundation’s meet and greet are designed to be entertaining, informational, and fun. Therapy is very different. Nancy and her therapy dog Callie volunteered in a facility for people living with Alzheimer’s. As part of a team of Physicians, Physical Therapists, and Occupational Therapists, their work was an integral part of the goal directed treatment plan.

    Treatment plan goals for a person living with Alzheimer’s are measured and documented. This allows the health care professional to evaluate patient progress. For example, they might measure, “Is the person more verbal or expressive during the therapy dog visit?” “Does the person appear more socially connected during the therapy dog visit?” The bonus in this goal directed work? In touching the dog, the person living with Alzheimer’s often feels a sense of affection and comfort.

    The work that Nancy and Callie did in the healthcare facility took a very personal turn when her husband was diagnosed with Alzheimer’s. Nancy was his caregiver for five years and Callie was instrumental in his care. To the point where at times, Nancy would hear her husband tell Callie what he was feeling. “When you are first diagnosed it is a lonely place, to know you have this disease. Animals give you a way to find comfort and release.” Callie was getting on in years, so with his permission, and for his 80th birthday, Nancy got him another dog. All three of them visited him in hospice. It was important for he and the dogs to snuggle, and the dog’s needed to know the inevitable outcome.

    Becoming registered for Animal-Assisted Interactions requires a commitment from both the owner/handler and the animal. Both must go through training with a certified pet dog trainer, be evaluated for temperament and behavior, and have their veterinarian assess overall health. The dog is evaluated for temperament; reliable, controllable, predictable are the criteria needed for registration. During this evaluation process, the dog is familiarized with situations they wouldn’t normally face, like walking around medical equipment or being with around people with movement disorders. All this puts pressure on the dogs, so New York Therapy Animals makes sure there is downtime at home, limiting visits to two hours within 24 hours.

    There is specific training for facilitating interaction between the dog and the person living with dementia. Owner/handlers are trained on how to position the dog, so it is comfortable and the person with dementia can pet the dog appropriately. Handlers are trained to sit at eye level to facilitate conversations. Any questions should center on the dog, be clear, and have ample time given to respond. Of course, sitting quietly without saying anything is also important.

    In The Advocate article: How important is touch in the care of an Alzheimer’s patient? I learned that touch can ease anxieties and help increase feelings of general well-being. Indeed, touch can make an emotional connection. This is key, because individuals living with dementia have difficulty communicating. I certainly witnessed those connections at the AFA Class. Some of the people living with dementia were communicating verbally, others didn’t speak. But each dog was a catalyst to social interaction and communication through the gentle touches, huge smiles, and affection they gave to Murphy and April. Interpersonal communication is not limited to dogs. Other domesticated animals can be trained for therapy such as a cat, bunny, horse or llama.
     
    As Nancy explained to me, the human-animal bond is very strong, and for a moment in time people can be reminded of their pet from years past. They can feel unconditional love and comfort because an animal is non-judgmental. This helps them to relax and lifts their spirits.
     
    We are fortunate that the Alzheimer’s Foundation of America is local and holds these community programs. If you live elsewhere in the country and are interested in Animal-Assisted Interactions, try contacting a national organization to see if they know of local programs. Try contacting local assisted living, skilled nursing, or day rehabilitation programs to see if they run a similar program. Typical dog therapy visits to people occur in facilities, but you may find an organization that comes into your home.

    Thanks to Nancy George-Michalson of New York Therapy Animals, Inc., Murphy and her owner Margaret, and April and her owner Beth, for their generosity in sharing information and their dogs. New York Therapy Animals is a 501(c)(3) non-profit organization. The volunteers and their trained dogs visit in healthcare facilities, shelters, schools, and libraries. New York Therapy Animals participates in the Reading Education Assistance Dogs® (R.E.A.D®) program where children read to therapy dogs to gain self-confidence.

    Thanks to The Alzheimer’s Foundation of America. They do amazing work.

    *Person’s name has been changed.

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